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Healthcare Barriers and Inequities: The Lived Experiences of Women with Intellectual Disabilities in Chile

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Title: Healthcare Barriers and Inequities: The Lived Experiences of Women with Intellectual Disabilities in Chile
Language: English
Authors: Izaskun Álvarez-Aguado (ORCID 0000-0002-8021-525X), Vanessa Vega Córdova (ORCID 0000-0003-3333-4798), Miguel Roselló-Peñaloza (ORCID 0000-0001-5567-5513), Maryam Farhang (ORCID 0000-0001-6345-6329), Felipe Muñoz La Rivera (ORCID 0000-0002-6674-2168), Félix González-Carrasco (ORCID 0000-0001-7487-0154), Herbert Spencer González (ORCID 0000-0003-1484-4477)
Source: British Journal of Learning Disabilities. 2025 53(3):446-456.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Females, Access to Health Care, Barriers, Mild Intellectual Disability, Moderate Intellectual Disability, Attitudes toward Disabilities, Social Bias, Health Personnel
Geographic Terms: Chile
DOI: 10.1111/bld.12653
ISSN: 1354-4187
1468-3156
Abstract: Background: Women with intellectual disabilities face major barriers to healthcare access. This study explored the experiences of 120 women with mild to moderate intellectual disabilities in Chile and their interactions with healthcare systems. Method: A qualitative design was used, collecting data through semi-structured interviews to examine communication challenges, discrimination and unmet support needs. Results: Participants reported difficulties understanding medical terminology, limited time for questions and a lack of visual aids. They also experienced discrimination, including infantilization and negative provider attitudes, which undermined their autonomy. The absence of tailored support, such as simplified materials and personalized guidance, further hindered their engagement with healthcare services. Conclusions: Findings highlighted systemic inequities influenced by gender and disability biases. Participants stressed the need for inclusive provider training and accessible communication tools. Recommendations included visual aids, specialized healthcare navigation support, and inclusive health education programs to improve equitable healthcare access.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1482093
Database: ERIC
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  Value: <anid>AN0187616980;f0401sep.25;2025Sep01.04:50;v2.2.500</anid> <title id="AN0187616980-1">Healthcare Barriers and Inequities: The Lived Experiences of Women With Intellectual Disabilities in Chile </title> <p>Background: Women with intellectual disabilities face major barriers to healthcare access. This study explored the experiences of 120 women with mild to moderate intellectual disabilities in Chile and their interactions with healthcare systems. Method: A qualitative design was used, collecting data through semi‐structured interviews to examine communication challenges, discrimination and unmet support needs. Results: Participants reported difficulties understanding medical terminology, limited time for questions and a lack of visual aids. They also experienced discrimination, including infantilization and negative provider attitudes, which undermined their autonomy. The absence of tailored support, such as simplified materials and personalized guidance, further hindered their engagement with healthcare services. Conclusions: Findings highlighted systemic inequities influenced by gender and disability biases. Participants stressed the need for inclusive provider training and accessible communication tools. Recommendations included visual aids, specialized healthcare navigation support, and inclusive health education programs to improve equitable healthcare access.</p> <p>Summary: Women with intellectual disabilities have trouble getting good healthcare.The study looked at the experiences of 120 women in Chile and the problems they faced.The biggest problems were hard‐to‐understand medical language, discrimination and lack of support. Doctors used complicated words, did not give enough time for questions, and did not always treat women with respect.Healthcare should be easier to understand and more inclusive. Doctors and nurses need training, medical information should use simple words and pictures, and women should get more support to understand their health.Fixing these problems will help women get better healthcare and be treated with respect. Everyone deserves clear, fair and supportive medical care.</p> <p>Keywords: healthcare access; healthcare equity; inclusive health practices; intellectual disabilities; women's health</p> <hd id="AN0187616980-2">Introduction</hd> <p>Access to healthcare is a fundamental human right and a cornerstone of health equity (e.g., United Nations [<reflink idref="bib37" id="ref1">37</reflink>]; Organization of American States [<reflink idref="bib29" id="ref2">29</reflink>]). For women with intellectual disabilities, this right is often compromised due to intersecting barriers, including gender‐based discrimination and attitudinal biases within healthcare systems (Matin et al. [<reflink idref="bib21" id="ref3">21</reflink>]). Intellectual disabilities refer to significant limitations in intellectual functioning and adaptive behaviour, which affect conceptual, social and practical skills. These challenges manifest before the age of 18 and are lifelong, influencing an individual's ability to communicate, learn and live independently (American Association on Intellectual and Developmental Disabilities [<reflink idref="bib4" id="ref4">4</reflink>]).</p> <p>Globally, healthcare access for individuals with intellectual disabilities varies greatly. Women with intellectual disabilities face complex barriers to healthcare, including stigma, insufficient provider training and systemic neglect, as evidenced by research in the United States (Aguillard et al. [<reflink idref="bib1" id="ref5">1</reflink>]). Additional studies from Europe—particularly the United Kingdom and Scandinavia—along with North America and Australasia, consistently report poorer overall health outcomes for this population, including higher rates of untreated chronic conditions such as diabetes and cardiovascular disease (Liao et al. [<reflink idref="bib19" id="ref6">19</reflink>]; Matin et al. [<reflink idref="bib21" id="ref7">21</reflink>]). Access to mental health services is also significantly limited, with many women unable to receive appropriate diagnosis or treatment for conditions such as depression or anxiety, which are often more prevalent due to social isolation and stigma (Lake et al. [<reflink idref="bib18" id="ref8">18</reflink>]; McCormick et al. [<reflink idref="bib23" id="ref9">23</reflink>]). Diverse studies at the global level show that these health inequalities, affecting individuals with intellectual disabilities, are associated with significantly higher rates of morbidity and preventable deaths—for example, in countries such as Denmark, Canada, Turkey and South Korea—underscoring the urgent need to implement specific interventions to mitigate these negative impacts (Thygesen et al. [<reflink idref="bib35" id="ref10">35</reflink>]; Umucu et al. [<reflink idref="bib36" id="ref11">36</reflink>]). In terms of quality of life, women with intellectual disabilities report significantly lower levels compared to both men with intellectual disabilities and women without disabilities (Álvarez‐Aguado et al. [<reflink idref="bib3" id="ref12">3</reflink>]; Jacinto et al. [<reflink idref="bib16" id="ref13">16</reflink>]). They frequently face barriers in accessing employment, education and community integration, all of which negatively impact their mental and physical well‐being (Gregson et al. [<reflink idref="bib11" id="ref14">11</reflink>]; Patel et al. [<reflink idref="bib30" id="ref15">30</reflink>]). For example, a global systematic review found that less than 30% of women with intellectual disabilities regularly access gynaecological examinations, compared to 70% of women without disabilities (Matin et al. [<reflink idref="bib21" id="ref16">21</reflink>]). Moreover, research conducted in Australia, Europe and South Africa indicated that women with intellectual disabilities have higher rates of obesity and physical inactivity (Beltran‐Arreche et al. [<reflink idref="bib5" id="ref17">5</reflink>]). Additionally, systemic barriers, such as inaccessible healthcare facilities and limited accommodations for cognitive disabilities, exacerbate these inequalities. Gendered biases also manifest in provider attitudes, with women often infantilized or dismissed in healthcare settings, further complicating their autonomy and decision‐making. Such biases not only undermine women's ability to advocate for themselves but also erode trust in the healthcare system (Bishop et al. [<reflink idref="bib7" id="ref18">7</reflink>]).</p> <p>Reproductive health presents significant challenges for women with intellectual disabilities (Pérez‐Curiel et al. [<reflink idref="bib31" id="ref19">31</reflink>]; Schmidt et al. [<reflink idref="bib32" id="ref20">32</reflink>]). Limited access to contraception counselling, inadequate information about reproductive health, and a lack of access to prenatal and postnatal care are prevalent issues. Mental health disparities are especially evident in the United Kingdom, where women with intellectual disabilities face elevated levels of stress, anxiety and depression (McMahon and Hatton [<reflink idref="bib24" id="ref21">24</reflink>]). In the United States, research highlights a heightened risk of forced sterilizations among this population, representing a serious violation of their reproductive rights (Olsen et al. [<reflink idref="bib27" id="ref22">27</reflink>]; Shady et al. [<reflink idref="bib33" id="ref23">33</reflink>]). Moreover, inadequate support during pregnancy and childbirth can result in poorer maternal and neonatal outcomes, with many women reporting a lack of understanding or empathy from healthcare providers (Gleason et al. [<reflink idref="bib10" id="ref24">10</reflink>]; Lo et al. [<reflink idref="bib20" id="ref25">20</reflink>]).</p> <p>Beyond reproductive health, women with intellectual disabilities face challenges in achieving a good quality of life due to unmet needs in housing, social support and healthcare access. These factors significantly contribute to their heightened vulnerability to social exclusion and abuse. The absence of targeted health interventions further increases vulnerability to preventable conditions and reduces overall quality of life. For example, some studies—particularly in Canada, South Korea, Europe, Taiwan and the United States—highlight that only 20% of women with intellectual disabilities undergo cervical cancer screenings, in stark contrast to the general population (Hansford et al. [<reflink idref="bib13" id="ref26">13</reflink>]; Kuper et al. [<reflink idref="bib17" id="ref27">17</reflink>]). In addition to reproductive challenges, the lack of appropriate accommodations in mental health care services leaves many women with untreated psychological conditions, exacerbating their vulnerability to social exclusion and abuse (McConnell and Phelan [<reflink idref="bib22" id="ref28">22</reflink>]). Structural barriers, compounded by stigma and lack of training among providers, create a significant gap in reproductive and general health services tailored to their needs. These gaps not only threaten physical health but also impede mental and emotional well‐being, reducing the overall quality of life for women with intellectual disabilities.</p> <p>In Latin America and the Caribbean, the challenges faced by women with intellectual disabilities are exacerbated by systemic inequalities and cultural stigmas related to both disability and gender. Healthcare systems in the region are often underfunded and poorly equipped to meet their specific needs. Limited cognitive accommodations—such as easy‐to‐read materials and extended consultation times—are further hindered by the absence of gender‐sensitive healthcare policies. In countries such as Brazil and Peru, for example, women often rely on informal caregiving networks, which can restrict their autonomy and increase dependency (Berlinski et al. [<reflink idref="bib6" id="ref29">6</reflink>]). In this regard, studies in the region indicate that only 10%–15% of women with intellectual disabilities receive annual medical check‐ups, in stark contrast to the general population, highlighting significant gaps in preventive care. Moreover, persistent cultural stigmas further marginalize these women, often rendering them invisible in healthcare planning and policy discussions (Hashemi et al. [<reflink idref="bib14" id="ref30">14</reflink>]).</p> <p>Chile's healthcare system is characterized by a mixed model: a robust public sector managed primarily through the National Health Fund of Chile (FONASA) and the Ministry of Health, along with a private sector largely based on insurance. In Chile, even women in the general population face challenges in accessing timely and comprehensive healthcare services; issues such as disparities in preventive care, long waiting times and fragmented continuity of care are prevalent, especially among those from lower socioeconomic backgrounds or residing in rural areas (Ministerio de Salud de Chile [<reflink idref="bib25" id="ref31">25</reflink>]; Organization for Economic Co‐operation and Development [<reflink idref="bib28" id="ref32">28</reflink>]). This dual structure creates significant differences in access to and quality of care, which are particularly evident among vulnerable groups such as women with intellectual disabilities.</p> <p>In the Chilean context, women with intellectual disabilities face significant barriers in accessing essential services, including preventative care, mental health support and general medical services (Hichins‐Arismendi and Yupanqui‐Concha [<reflink idref="bib15" id="ref33">15</reflink>]). Despite legal frameworks promoting disability rights, such as the establishment of the National Disability Service, there are systemic gaps in ensuring gender‐sensitive healthcare services (Álvarez‐Aguado et al. [<reflink idref="bib3" id="ref34">3</reflink>]). Rural women encounter additional challenges, including transportation difficulties, reduced access to specialized care and a lack of community‐based health interventions (Yupanqui‐Concha et al. [<reflink idref="bib41" id="ref35">41</reflink>]).</p> <p>Attitudinal biases among healthcare providers in Chile also undermine the quality of care for women with intellectual disabilities. Paternalistic practices, where healthcare decisions are made without consulting the individual, are prevalent. These practices not only erode trust in the healthcare system but also exacerbate health disparities, particularly in areas such as chronic disease management, mental health treatment and preventative healthcare (Álvarez‐Aguado et al. [<reflink idref="bib2" id="ref36">2</reflink>]).</p> <p>The purpose of this study was to explore the lived experiences of women with intellectual disabilities in accessing healthcare services. The study sought to identify the barriers they encountered, including systemic, interpersonal and cultural factors, as well as the facilitators that could enhance their access to equitable and inclusive care. By providing a nuanced understanding of these challenges and opportunities, the study aims to inform policies and practices that promote improved quality of life and health outcomes for this population.</p> <hd id="AN0187616980-3">Materials and Methods</hd> <p>A qualitative approach was employed to explore the lived experiences of women with intellectual disabilities in accessing healthcare services. The research design focused on in‐depth narratives to provide a rich understanding of the participants' perspectives. Given the unique nature of the research objective, it was considered necessary to have a sample of 120 participants to capture the rich, diverse and multifaceted experiences of women with intellectual disabilities across various regions of Chile. Although qualitative studies in the field of adulthood for people with intellectual disabilities typically involve smaller samples to allow for in‐depth analysis, an effort was made to encompass a wide range of perspectives by including participants from urban, semi‐urban and rural settings. This diversity not only enhanced the representativeness of the findings but also provided a more nuanced understanding of the systemic, interpersonal and cultural barriers these women faced in accessing healthcare services. By engaging with a larger number of participants through in‐depth narrative methods, the study explored subtle variations in experiences and identified common themes that might have been overlooked in a smaller, less diverse sample.</p> <hd id="AN0187616980-4">Participants</hd> <p>The study employed convenience sampling to recruit 120 women with intellectual disabilities aged between 25 and 75 years (mean age = 50.2, SD = 13.4) from urban, semi‐urban and rural regions across Chile (Table 1). Recruitment was conducted through partnerships with nine community organizations specializing in intellectual disability services. Efforts were made to ensure diverse representation across socioeconomic backgrounds, levels of support needs and familiarity with healthcare systems.</p> <p>1 Table Sociodemographic data of the participants.</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th>Sociodemographic characteristics</th><th>Category</th><th>Frequency</th><th>% of participants</th></tr></thead><tbody valign="top"><tr><td>Socioeconomic background</td><td>Low</td><td>60</td><td>50</td></tr><tr><td>Middle</td><td>42</td><td>35</td></tr><tr><td>High</td><td>18</td><td>15</td></tr><tr><td>Chronic conditions</td><td>Diabetes</td><td>32</td><td>26</td></tr><tr><td>Hypertension</td><td>30</td><td>25</td></tr><tr><td>Obesity</td><td>48</td><td>40</td></tr><tr><td>Other</td><td>6</td><td>5</td></tr><tr><td>None</td><td>4</td><td>3</td></tr><tr><td>Mental health issues</td><td>Anxiety</td><td>56</td><td>46</td></tr><tr><td>Depression</td><td>46</td><td>38</td></tr><tr><td>Other</td><td>12</td><td>10</td></tr><tr><td>None</td><td>6</td><td>5</td></tr><tr><td>Additional diagnoses</td><td>Autism</td><td>18</td><td>15</td></tr><tr><td>Epilepsy</td><td>12</td><td>10</td></tr><tr><td>Cerebral palsy</td><td>6</td><td>5</td></tr><tr><td>Other</td><td>31</td><td>25</td></tr><tr><td>None</td><td>53</td><td>44</td></tr><tr><td>Educational level</td><td>Primary education</td><td>60</td><td>50</td></tr><tr><td>Secondary education</td><td>12</td><td>10</td></tr><tr><td>No education</td><td>48</td><td>40</td></tr><tr><td>Employment status</td><td>Formal employment</td><td>11</td><td>9</td></tr><tr><td>Supported employment</td><td>47</td><td>39</td></tr><tr><td>Unemployed</td><td>62</td><td>51</td></tr><tr><td>Residence</td><td>Urban</td><td>54</td><td>45</td></tr><tr><td>Rural</td><td>36</td><td>30</td></tr><tr><td>Semi‐urban</td><td>30</td><td>25</td></tr><tr><td>Place of residence</td><td>Residential care</td><td>82</td><td>68</td></tr><tr><td>Parental home</td><td>26</td><td>21</td></tr><tr><td>Independent living</td><td>12</td><td>11</td></tr><tr><td>Healthcare access</td><td>Public services</td><td>98</td><td>81</td></tr><tr><td>Private services</td><td>22</td><td>18</td></tr><tr><td>Frequency of medical visits</td><td>Monthly</td><td>52</td><td>43</td></tr><tr><td>Every 6 months</td><td>33</td><td>27</td></tr><tr><td>Annually</td><td>17</td><td>14</td></tr><tr><td>Other</td><td>18</td><td>15</td></tr><tr><td>Medical appointment attendance</td><td>Attended with a companion</td><td>78</td><td>65</td></tr><tr><td>Attended alone</td><td>42</td><td>35</td></tr></tbody></table> </ephtml> </p> <p>Inclusion criteria comprised having a diagnosis of mild or moderate intellectual disabilities as confirmed by clinical records, access to basic healthcare services and the capacity to provide informed consent. Participants with severe intellectual disabilities or additional sensory impairments, such as significant hearing or visual loss, were excluded to ensure effective communication and participation in the study.</p> <hd id="AN0187616980-5">Instrument</hd> <p>The data collection instrument used was a semi‐structured in‐depth interview composed of 20 questions (Table 2). The interview format was specifically designed with cognitive accessibility principles in mind, ensuring that the language and structure were adapted to meet the communicative needs of women with intellectual disabilities. This approach allowed for flexibility in addressing diverse participant needs while facilitating an in‐depth exploration of specific topics.</p> <p>2 Table Thematic areas and sample interview questions.</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th>Thematic area</th><th>Sample questions</th></tr></thead><tbody valign="top"><tr><td>Personal experiences with healthcare services</td><td>Did the doctor ask about how you felt or what you needed?Did you feel safe and comfortable during your visit?</td></tr><tr><td>Specific barriers and challenges</td><td>Was it hard for you to explain your problems to the doctor or nurse?Did you find it difficult to get to the hospital or clinic?</td></tr><tr><td>Suggestions for improvement</td><td>What could hospitals do to make it easier for you to visit?What would you like doctors to do differently to help you?</td></tr><tr><td>Impact of healthcare on quality of life</td><td>Does going to the doctor help you feel stronger or more independent?Do you think healthcare helps you feel more included in daily activities?</td></tr></tbody></table> </ephtml> </p> <hd id="AN0187616980-6">Data Collection</hd> <p>This study received ethical approval (CEC_FE_2023006). Data collection employed semi‐structured interviews lasting 45–60 min, designed to explore participants' healthcare experiences. Interviewers adapted their language and used visual aids when necessary to ensure understanding and reduce anxiety. Interviews were audio‐recorded and supplemented with detailed field notes capturing non‐verbal cues and contextual observations. After each interview, reflections and observations were documented to refine subsequent sessions. Data collection occurred over 3 months, allowing sufficient time to build rapport with participants and accommodate their individual needs.</p> <p>A team of six trained female interviewers conducted the interviews. While most interviewers were unfamiliar to the participants before the study, a few had previous contact with some of the women through their roles in community organizations.</p> <p>Before administering the instrument, all participants provided informed consent (see Table 3 for the process followed).</p> <p>3 Table Informed consent process for the research.</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th>Stage</th><th>Actions</th><th>Adaptations</th></tr></thead><tbody valign="top"><tr><td>1</td><td>Explanation of objectives and scope of the project</td><td>Documents in easy reading format</td></tr><tr><td>Presentation of the research team</td><td>Use of pictograms</td></tr><tr><td>Presentation of similar data collection instrument (example)</td><td>Use of visual support</td></tr><tr><td>Demonstration of similar instrument application (example)</td><td>Support by centre's professionals</td></tr><tr><td>2</td><td>Explanation of the impact of the research</td><td>Documents in easy reading format</td></tr><tr><td>Research implications for their life</td><td>Use of pictograms</td></tr><tr><td>Explanation of the benefits of their participation</td><td>Use of visual support</td></tr><tr><td>Information about the risks of participation</td><td>Support by centre's professionals</td></tr><tr><td>3</td><td>Explanation of the type of participation</td><td>Documents in easy reading format</td></tr><tr><td>Explanation of the form of participation</td><td>Use of pictograms</td></tr><tr><td>Presentation of the informed consent document</td><td>Use of visual support</td></tr><tr><td>Informed consent document review</td><td>Consent in easy reading format</td></tr><tr><td>Simulation of a consent signature (example)</td><td>Support by centre's professionals</td></tr></tbody></table> </ephtml> </p> <hd id="AN0187616980-7">Data Analysis</hd> <p>Thematic analysis was used to analyze the collected data, following Braun and Clarke's ([<reflink idref="bib8" id="ref37">8</reflink>]) framework. This approach is well‐suited for identifying patterns and themes within qualitative narratives. The analysis process began with a thorough review of transcripts and field notes, enabling familiarization with the data and identification of initial concepts.</p> <p>Using NVivo software, the data were organized into meaningful units and coded. Codes were developed inductively from the data and deductively based on predefined themes. To ensure reliability, coding was performed independently by the principal investigator and two experienced coders. Inter‐coder reliability was assessed using Cohen's Kappa, achieving a score of 0.86, indicating a high level of agreement.</p> <p>After initial coding, similar codes were merged, and subcategories were developed to provide a deeper understanding of the data. For example, the code 'accessibility challenges' was divided into 'physical barriers' and 'communication barriers'. The frequency of themes was calculated to identify the most prevalent issues, such as 'Communication barriers' appearing in 80% of interviews.</p> <p>Representative quotes were selected to illustrate each theme, ensuring that participants' voices were central to the findings. Triangulation and validation by a second researcher strengthened the robustness and credibility of the analysis. This multi‐faceted approach provided a detailed and nuanced understanding of participants' healthcare experiences, barriers and suggestions for improvement.</p> <hd id="AN0187616980-8">Results</hd> <p>The data analysis revealed 3 central themes and 12 subthemes regarding the experiences of women with intellectual disabilities accessing healthcare services in Chile: (a) Communication barriers, (b) Discrimination and differential treatment and (c) Support needs in healthcare (Table 4). These themes underscore the structural, attitudinal and systemic barriers faced by participants, as well as their perspectives on improving accessibility and equity within healthcare systems.</p> <p>4 Table Themes, subthemes, mentions and co‐occurrences.</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th>Main theme</th><th>Subtheme</th><th>Total mentions<ext-link href="1" /></th><th>Co‐occurrences with other subthemes</th></tr></thead><tbody valign="top"><tr><td>Communication barriers</td><td>Use of complex medical terminology</td><td>110</td><td>Lack of time for questions (106), No visual aids (92)</td></tr><tr><td>Lack of time for questions and clarification</td><td>85</td><td>Complex terminology (81), Scheduling challenges (80)</td></tr><tr><td>Absence of visual aids or adapted materials</td><td>74</td><td>Complex terminology (72), Lack of guidance (70)</td></tr><tr><td>Challenges with scheduling and follow‐up</td><td>65</td><td>Visual aids (63), Lack of time for questions (57)</td></tr><tr><td>Discrimination and differential treatment</td><td>Infantilization by healthcare staff</td><td>100</td><td>Lack of autonomy (98), Stereotyping (83)</td></tr><tr><td>Perceived lack of autonomy</td><td>97</td><td>Infantilization (84), Negative attitudes (72)</td></tr><tr><td>Negative provider attitudes</td><td>62</td><td>Infantilization (56), Lack of autonomy (55)</td></tr><tr><td>Stereotyping based on appearance</td><td>80</td><td>Negative attitudes (78), Infantilization (65)</td></tr><tr><td>Support needs in healthcare</td><td>Access to clear and easy‐to‐read materials</td><td>95</td><td>Personalized guidance (87), Use of visual aids (67)</td></tr><tr><td>Personalized guidance from healthcare staff</td><td>88</td><td>Clear materials (77), Scheduling challenges (64)</td></tr><tr><td>Use of visual and technological aids</td><td>76</td><td>Easy‐to‐read materials (75), Personalized guidance (52)</td></tr><tr><td>Inclusion in health promotion and education</td><td>87</td><td>Visual aids (60), Personalized guidance (49)</td></tr></tbody></table> </ephtml> </p> <p>1 1 'Mentions' refers to the number of people reporting these issues.</p> <hd id="AN0187616980-9">Communication Barriers</hd> <p>Communication barriers were a recurring theme, with participants frequently reporting difficulties understanding medical terminology, a lack of opportunities to ask questions, and the absence of visual aids or adapted materials. These barriers significantly limited participants' ability to engage with healthcare services and make informed decisions about their care.</p> <hd id="AN0187616980-10">Use of Complex Medical Terminology</hd> <p>Participants consistently described the language used by healthcare professionals as inaccessible and confusing. One participant expressed, 'The doctor used so many big words that I felt like I didn't belong there. I didn't even know what they were talking about' (P117). Another shared, 'It felt like they were speaking in a different language. I just nodded because I didn't want to look silly' (P13). The frequent use of medical jargon not only alienated participants but also hindered their understanding of diagnoses and treatment options. Some noted that complex terminology often created unnecessary stress. 'I was afraid to ask what the doctor meant because I didn't want to feel embarrassed', remarked another participant (P39). These insights underscore the need for healthcare providers to adopt more accessible language to empower patients in decision‐making processes.</p> <hd id="AN0187616980-11">Lack of Time for Questions and Clarification</hd> <p>The fast pace of consultations often left participants unable to ask questions or clarify doubts. 'The doctor was in such a hurry that I couldn't even finish my question', shared one participant (P42). Another added, 'I wanted to ask about my medicine, but the nurse said there wasn't time' (P30). The rushed nature of interactions often caused participants to feel dismissed, as highlighted by one participant who stated, 'I felt like my time didn't matter; they just wanted me out of the room' (P55). This lack of interaction exacerbated participants' feelings of frustration and exclusion, emphasizing the importance of creating opportunities for meaningful dialogue and tailored explanations during appointments.</p> <hd id="AN0187616980-12">Absence of Visual Aids or Adapted Materials</hd> <p>Many participants expressed a desire for visual aids and simplified materials to help them better understand medical procedures and instructions. 'If they gave me pictures or something easy to read, I could follow what they were saying', explained one participant (P93). Another said, 'I had to ask my sister to explain the papers because I couldn't read them myself' (P17). Without such aids, participants frequently relied on family members for interpretation, which some found frustrating. 'I want to understand things myself, not always depend on others', shared one participant (P81). Providing accessible resources, such as diagrams or simplified written guides, was highlighted as an essential improvement for empowering women with intellectual disabilities.</p> <hd id="AN0187616980-13">Challenges With Scheduling and Follow‐Up</hd> <p>Scheduling appointments and receiving follow‐up care presented additional challenges. 'I called to make an appointment, but they told me I had to do it online, and I don't know how to use the website', said one participant (P8). Others mentioned long waiting times or confusion about next steps after consultations. 'After the appointment, I didn't know what to do next because no one explained it to me', remarked one participant (P19). These barriers often resulted in missed appointments or delays in necessary care, with one participant noting, 'It took me months to get the help I needed because I didn't understand the process' (P96).</p> <hd id="AN0187616980-14">Discrimination and Differential Treatment</hd> <p>Participants frequently reported experiences of discrimination and feeling undervalued by healthcare professionals. This theme encompassed infantilization, lack of autonomy and negative attitudes from staff, which collectively undermined participants' confidence and trust in the healthcare system.</p> <hd id="AN0187616980-15">Infantilization by Healthcare Staff</hd> <p>Many women described being treated like children during medical consultations. 'The nurse talked to me like I was a little girl, not an adult', said one participant (P15). Another explained, 'They didn't let me speak for myself. They only asked my caregiver what I needed' (P75). Infantilization not only diminished participants' sense of agency but also perpetuated stereotypes about their capabilities. Participants often felt their opinions and preferences were dismissed without consideration, leading to frustration and a lack of trust. 'I felt invisible, like my voice didn't matter', shared another participant (P33). This pervasive attitude undermined participants' confidence and ability to engage with healthcare services on equal footing.</p> <hd id="AN0187616980-16">Perceived Lack of Autonomy</hd> <p>Participants shared numerous instances where their autonomy was disregarded, with decisions made on their behalf without consultation. 'I wanted to decide about my treatment, but they acted like I wasn't capable', said one participant (P100). Others echoed similar frustrations. 'They didn't even ask me what I thought. It was like I wasn't there' (P73). This lack of autonomy extended to critical aspects of care, such as consent for procedures or choice of treatment. Many participants described feeling powerless and excluded, with one noting, 'They decided everything for me without explaining why' (P22). These experiences highlighted a systemic lack of respect for the decision‐making abilities of women with intellectual disabilities.</p> <hd id="AN0187616980-17">Negative Provider Attitudes</hd> <p>Dismissive and condescending attitudes from healthcare staff further alienated participants. 'The doctor looked at me like I was wasting their time', shared one participant (P53). Another noted, 'The nurse didn't explain anything because she assumed I wouldn't understand' (P111). These attitudes often left participants feeling dehumanized and unwelcome. 'It felt like they didn't care about me as a person', remarked one participant (P76). Negative provider attitudes not only perpetuated stigma but also discouraged participants from seeking care in the future, creating a cycle of avoidance and neglect.</p> <hd id="AN0187616980-18">Stereotyping Based on Appearance</hd> <p>Participants frequently felt judged based on their physical appearance or mannerisms. 'They looked at me like I was incapable just because of how I talk', explained one participant (P41). Another stated, 'I felt like they decided who I was before even talking to me' (P66). These stereotypes reinforced barriers to equitable care and contributed to a sense of dehumanization. Many participants expressed that these assumptions affected how seriously their concerns were taken, with one sharing, 'They assumed I couldn't feel pain the same way, just because of how I looked' (P119). Such biases further marginalized participants and limited their access to appropriate care.</p> <hd id="AN0187616980-19">Support Needs in Healthcare</hd> <p>Participants emphasized the importance of tailored support to enhance their healthcare experiences. These included access to clear materials, personalized guidance and the integration of visual and technological aids.</p> <hd id="AN0187616980-20">Access to Clear and Easy‐to‐Read Materials</hd> <p>Participants stressed the need for simplified medical documents and instructions. 'If my prescriptions were written in simple words, I wouldn't have to rely on someone else to explain them', said one participant (P62). Clear materials were seen as empowering tools that could enhance understanding and independence. 'I want to know what I'm taking and why, without needing someone to interpret for me', added another participant (P58). Participants also highlighted the importance of materials that cater to varying levels of literacy and cognitive abilities, ensuring inclusivity.</p> <hd id="AN0187616980-21">Personalized Guidance From Healthcare Staff</hd> <p>Having a healthcare professional dedicated to guiding participants through appointments was seen as critical. 'If someone could explain each step and stay with me, I'd feel much better', noted one participant (P14). Another explained, 'I needed someone to help me understand and not rush me' (P36). Personalized guidance was described as essential for reducing anxiety and fostering trust. Participants frequently mentioned the value of building long‐term relationships with supportive professionals who understood their needs and preferences.</p> <hd id="AN0187616980-22">Use of Visual and Technological Aids</hd> <p>Participants suggested incorporating visual tools, such as diagrams or videos, to make healthcare information more accessible. 'If they showed me pictures or videos, I'd understand better', said one participant (P110). Apps and interactive tools were also highlighted as valuable resources for preparation and follow‐up. 'Technology could help me remember what to do and why it's important', shared another participant (P47). Participants emphasized that such tools should be designed with cognitive accessibility in mind to ensure usability and effectiveness.</p> <hd id="AN0187616980-23">Inclusion in Health Promotion and Education</hd> <p>Participants expressed a desire for inclusive health education programs tailored to their needs. 'If someone taught me about healthy eating in a way I understood, I could take better care of myself', said one participant (P82). Such programs were seen as vital for addressing preventative care gaps and promoting autonomy. Participants also mentioned the importance of group‐based education sessions that fostered a sense of community and shared learning, making health promotion more engaging and accessible. 'Learning together with others like me would help me feel less alone and more confident', noted one participant (P17). These sessions could include practical demonstrations and interactive activities to encourage active participation and retention of information. Participants emphasized that health education should go beyond physical health and include emotional well‐being, stress management and social engagement strategies. 'Sometimes I feel stressed about my health, and no one teaches me how to manage that', remarked one participant (P61). Addressing these broader aspects of health could contribute significantly to improving overall quality of life.</p> <p>Based on the identified support needs, participants provided several recommendations aimed at improving healthcare accessibility and inclusivity for women with intellectual disabilities.</p> <p>These are summarized in Table 5 and reflect the priority assigned by participants.</p> <p>5 Table Support needs in healthcare.</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th>Recommendation</th><th>Description</th><th>Frequency</th><th>% of participants</th></tr></thead><tbody valign="top"><tr><td>Assistance of a specialized facilitator</td><td>Having a professional to provide step‐by‐step guidance and ensure understanding during medical processes</td><td>90</td><td>75</td></tr><tr><td>Simplified medical documentation</td><td>Adapting medical documents and instructions to easy‐to‐read formats</td><td>84</td><td>70</td></tr><tr><td>Inclusive training for healthcare personnel</td><td>Ensuring that medical staff receive training in intellectual disability and inclusive communication</td><td>81</td><td>67</td></tr><tr><td>Use of visual and technological aids</td><td>Incorporating visual aids and interactive tools to improve understanding and engagement</td><td>75</td><td>62</td></tr><tr><td>Group‐based health education programs</td><td>Offering collaborative and practical sessions tailored to individuals' needs</td><td>66</td><td>55</td></tr></tbody></table> </ephtml> </p> <p>Participants emphasized the critical role of a specialized facilitator who could provide step‐by‐step guidance during medical processes. This support was viewed as essential in helping participants navigate healthcare systems with greater confidence and clarity. Simplifying medical documents and adapting them into easy‐to‐read formats was another frequently cited need, as it would enable participants to understand their medical instructions without relying on others. Training healthcare personnel in inclusive practices emerged as a vital recommendation. Participants noted that medical staff equipped with the knowledge and skills to communicate effectively with individuals with intellectual disabilities could significantly reduce instances of discrimination and enhance trust in healthcare systems. The incorporation of visual and technological aids, such as diagrams, videos and interactive applications, was also highlighted as a priority. These tools not only improve understanding but also empower participants to engage more actively in their healthcare decisions. Lastly, group‐based health education programs tailored to their needs were identified as a valuable initiative. Such programs offer collaborative learning opportunities that address preventative care and foster a sense of community.</p> <hd id="AN0187616980-24">Discussion</hd> <p>The findings of this study highlighted significant structural and attitudinal barriers faced by women with intellectual disabilities in accessing healthcare services in Chile. These barriers, which included communication challenges, discrimination and a lack of tailored supports, mirror systemic healthcare inequities observed globally. The results not only underscore the urgent need for targeted interventions but also present an opportunity to inform comprehensive policy and practice changes aimed at fostering a more inclusive healthcare system.</p> <p>Communication barriers were among the most frequently reported challenges, with participants emphasizing the difficulties posed by complex medical terminology and the lack of accessible materials. This is consistent with global research demonstrating how inaccessible language and insufficient communication tools exacerbate health disparities for individuals with intellectual disabilities (Breau [<reflink idref="bib9" id="ref38">9</reflink>]; Terras et al. [<reflink idref="bib34" id="ref39">34</reflink>]). For example, studies in the United States and Europe have shown that patients with intellectual disabilities often struggle to understand medical information, which affects their ability to make informed decisions (Gudelytė et al. [<reflink idref="bib12" id="ref40">12</reflink>]; Nijhof et al. [<reflink idref="bib26" id="ref41">26</reflink>]). It was common for women to attend medical appointments accompanied by a family member or support person, although some attended alone. Nevertheless, in this context, participants frequently expressed the importance of plain language resources and visual aids, which they perceived as empowering tools that could bridge communication gaps. Furthermore, the findings suggest that while accessible, easy‐to‐read information is available in Chile for some topics (e.g., legal, administrative or educational information), such resources are particularly scarce in the area of women's healthcare, highlighting an urgent need for their development and dissemination. These findings align with international evidence that highlights cognitive accessibility as a cornerstone for equitable healthcare delivery, calling for the systemic adoption of accessible communication practices across healthcare systems.</p> <p>Discrimination and differential treatment emerged as pervasive barriers that deeply affected participants' healthcare experiences. Descriptions of infantilization and stereotyping were common, reflecting a systemic undervaluation of the autonomy and capabilities of women with intellectual disabilities. Similar patterns of discriminatory attitudes have been documented globally, with healthcare professionals often underestimating the ability of individuals with intellectual disabilities to actively participate in their care (Matin et al. [<reflink idref="bib21" id="ref42">21</reflink>]; VanPuymbrouck et al. [<reflink idref="bib38" id="ref43">38</reflink>]). This not only perpetuates stigma but also discourages individuals from seeking healthcare services, contributing to a cycle of avoidance and unmet health needs. Addressing these barriers requires targeted training programs that promote inclusive and respectful attitudes among healthcare providers. Such programs, as demonstrated in contexts like the United Kingdom, have been effective in reducing biases and fostering more equitable patient‐provider interactions (Vela et al. [<reflink idref="bib39" id="ref44">39</reflink>]).</p> <p>Support needs identified in the study emphasized the critical role of tailored interventions in enhancing healthcare accessibility. Participants highlighted the value of having facilitators who could guide them through medical processes, underscoring the importance of personalized assistance in navigating complex healthcare systems. Additionally, the necessity of easy‐to‐read materials and visual aids was frequently cited, reinforcing the broader evidence that such tools can enhance comprehension and engagement (Waight and Oldreive [<reflink idref="bib40" id="ref45">40</reflink>]). These findings resonate with international best practices, where tailored supports have been shown to promote patient autonomy and improve health outcomes. Inclusive health education programs specifically designed for women with intellectual disabilities could address gaps in preventative care and foster greater health literacy. Such initiatives not only empower individuals but also create opportunities for meaningful participation in healthcare decisions.</p> <hd id="AN0187616980-25">Study Limitations and Strengths</hd> <p>This study has several limitations. First, the sample was limited to women with intellectual disabilities in Chile, which may restrict the generalizability of the findings to other contexts. The qualitative methodology, while providing rich insights, did not allow for statistical analysis. Additionally, the study focused solely on the perspectives of women with intellectual disabilities, excluding the viewpoints of those with more complex communication or sensory challenges and of healthcare providers or caregivers who might offer complementary insights into the barriers and potential solutions.</p> <hd id="AN0187616980-26">Practical Implications and Future Research Lines</hd> <p>The findings underscore the urgent need for systemic and attitudinal changes in healthcare for women with intellectual disabilities. Policymakers and healthcare institutions should prioritize the integration of inclusive training programs, ensuring that healthcare staff are equipped to address the unique needs of this population. In the Chilean context, the role of 'health facilitators' is particularly promising; professionals from both community and health sectors could be trained to act as bridges between women and health services, helping to overcome communication and access barriers. Future research should explore the impact of these interventions on health outcomes and patient autonomy. Future research should also include diverse perspectives and employ mixed‐methods approaches to quantify and expand upon these findings.</p> <hd id="AN0187616980-27">Conclusion</hd> <p>This study underscores the significant challenges faced by women with intellectual disabilities in accessing equitable healthcare. By identifying communication barriers, discriminatory attitudes and unmet support needs, the research highlights critical areas for systemic reform. Practical recommendations, including the adoption of tailored communication strategies, inclusive training, and supportive healthcare practices, provide a roadmap for creating more equitable and inclusive healthcare systems. Addressing these barriers not only promotes health equity but also advances the dignity and rights of women with intellectual disabilities, contributing to a more inclusive society.</p> <hd id="AN0187616980-28">Acknowledgements</hd> <p>This study was supported by the ANID FONDECYT INICIACIÓN under Grant 11230525.</p> <hd id="AN0187616980-29">Ethics Statement</hd> <p>This study was approved (CEC_FE_2023006) by the Ethical‐Scientific Committee of Universidad de las Américas, Chile.</p> <hd id="AN0187616980-30">Consent</hd> <p>All participants voluntarily signed an informed consent form before taking part in the study.</p> <hd id="AN0187616980-31">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0187616980-32">Data Availability Statement</hd> <p>The authors have nothing to report.</p> <ref id="AN0187616980-33"> <title> References </title> <blist> <bibl id="bib1" idref="ref5" type="bt">1</bibl> <bibtext> Aguillard, K., R. Hughes, G. L. 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PubType: Academic Journal
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Healthcare Barriers and Inequities: The Lived Experiences of Women with Intellectual Disabilities in Chile
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Izaskun+Álvarez-Aguado%22">Izaskun Álvarez-Aguado</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-8021-525X">0000-0002-8021-525X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Vanessa+Vega+Córdova%22">Vanessa Vega Córdova</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-3333-4798">0000-0003-3333-4798</externalLink>)<br /><searchLink fieldCode="AR" term="%22Miguel+Roselló-Peñaloza%22">Miguel Roselló-Peñaloza</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-5567-5513">0000-0001-5567-5513</externalLink>)<br /><searchLink fieldCode="AR" term="%22Maryam+Farhang%22">Maryam Farhang</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-6345-6329">0000-0001-6345-6329</externalLink>)<br /><searchLink fieldCode="AR" term="%22Felipe+Muñoz+La+Rivera%22">Felipe Muñoz La Rivera</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-6674-2168">0000-0002-6674-2168</externalLink>)<br /><searchLink fieldCode="AR" term="%22Félix+González-Carrasco%22">Félix González-Carrasco</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-7487-0154">0000-0001-7487-0154</externalLink>)<br /><searchLink fieldCode="AR" term="%22Herbert+Spencer+González%22">Herbert Spencer González</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-1484-4477">0000-0003-1484-4477</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2025 53(3):446-456.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Females%22">Females</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Mild+Intellectual+Disability%22">Mild Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Moderate+Intellectual+Disability%22">Moderate Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes+toward+Disabilities%22">Attitudes toward Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Bias%22">Social Bias</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Personnel%22">Health Personnel</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Chile%22">Chile</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/bld.12653
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1354-4187<br />1468-3156
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Women with intellectual disabilities face major barriers to healthcare access. This study explored the experiences of 120 women with mild to moderate intellectual disabilities in Chile and their interactions with healthcare systems. Method: A qualitative design was used, collecting data through semi-structured interviews to examine communication challenges, discrimination and unmet support needs. Results: Participants reported difficulties understanding medical terminology, limited time for questions and a lack of visual aids. They also experienced discrimination, including infantilization and negative provider attitudes, which undermined their autonomy. The absence of tailored support, such as simplified materials and personalized guidance, further hindered their engagement with healthcare services. Conclusions: Findings highlighted systemic inequities influenced by gender and disability biases. Participants stressed the need for inclusive provider training and accessible communication tools. Recommendations included visual aids, specialized healthcare navigation support, and inclusive health education programs to improve equitable healthcare access.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1482093
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1482093
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/bld.12653
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 446
    Subjects:
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Females
        Type: general
      – SubjectFull: Access to Health Care
        Type: general
      – SubjectFull: Barriers
        Type: general
      – SubjectFull: Mild Intellectual Disability
        Type: general
      – SubjectFull: Moderate Intellectual Disability
        Type: general
      – SubjectFull: Attitudes toward Disabilities
        Type: general
      – SubjectFull: Social Bias
        Type: general
      – SubjectFull: Health Personnel
        Type: general
      – SubjectFull: Chile
        Type: general
    Titles:
      – TitleFull: Healthcare Barriers and Inequities: The Lived Experiences of Women with Intellectual Disabilities in Chile
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Izaskun Álvarez-Aguado
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            NameFull: Vanessa Vega Córdova
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            NameFull: Miguel Roselló-Peñaloza
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            NameFull: Maryam Farhang
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            NameFull: Felipe Muñoz La Rivera
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            NameFull: Félix González-Carrasco
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            NameFull: Herbert Spencer González
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          Dates:
            – D: 01
              M: 09
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 1354-4187
            – Type: issn-electronic
              Value: 1468-3156
          Numbering:
            – Type: volume
              Value: 53
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              Value: 3
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            – TitleFull: British Journal of Learning Disabilities
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